Still worried

I'm here a year later with pain in the right quadrant that wraps to the back and bad fatigue. I cannot get the word cirrhosis out of my mind. I'm terrified the ultrasound and bloods missed something. I keep reading all of these horror stories that cirrhosis is missed on the ultrasound. I have no idea what this pain could be besides my liver ilas I drank way to much. Sorry just needed to vent! It is a living hell to feel like somethings wrong but can't get a diagnosis.

23 Replies

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  • Have you heard of the Fibro Scan ? if you get one it will tell you.

  • I have stopped going on the Web and reading medical symptoms you only put yourself under extreme stress I would recommend talking to your medical advisors that's the best way forward and stop worrying that will not solve anything all the best for the future

  • Do the docs know you drank?and do you drink anymore?if you take away the cause of the damage unless the damage is very severe the liver can reheal to some extent.unlike with pbc or some of the other autoimmune comditions where tha cause is inside our bodies so cant be removed.if your bloods were normal then that means that a decent chunck of your liver is probably fine.however i understand you need an answer! I have awful fatigue and an ache in right side...not all the time though.i am 16years since diagnosis and i do understand about needing to know whats going on

    Keep gping back

    Good luck.x

  • We're your labs normal? Did you have an ultrasound?

  • the symptoms sound like moderate and chronic hepatitis-get some more tests done. dont drink obviously-sounds like the liver is very inflamed. fibroscan will hopefully provide some answers

  • I asked about hepatitis. She ran alt ast and alp all under normal. My platelets are 249 and I heard low can be a good indicator of cirrhosis

  • what about ggt? my alt ast and alp were always normal-didn't stop me from having liver pain etc and other symptoms..GGT would be good to know

  • I never had a ggt I told the Dr and my hospital about my drinking and I had 3 cmps which were all normal except for the bilirubin. My Dr told me if there was anything sinister it would show on my ultrasound. But reading other posts I see that's not the case.

  • If you don't mind my being blunt here Linz, and I really do mean this in the kindest possible way, you really need to go and see a doctor or other professional about your anxiety.

    Posting here every so often is doing nothing for you but feeding your anxiety - and you're not dealing with that at all.

    Anything anyone says here will be either to

    a) reassure you

    b) Tell you to go to the doctor. These being the same doctors whose diagnosis you don't trust.

    If I were in your position I would go and see a doctor and yes - run through the pain again in case there is a physical issue they have not yet considered - but also run through the anxiety and the time and effort you're expending on trying to find a liver problem specifically so that they can understand that your level of anxiety is not what would be expected given what they are telling you.

    Sorry if that's a bit direct but honestly I think you're focussing on the wrong issue here.

    Best wishes.

  • No I don't mind u being blunt. I am staring anxiety meds soon. I know it does play a part in it. Even when I start the meds I will still worry about my liver I know this pain isn't imaginary. I overdid the drinking and no medicine will take away that fear.

  • Hi,

    Well the pain could be any number of things.

    Given that you've had it extensively investigated what it's least likely to be is a liver complaint.

  • indeed -that's quite correct. I have no idea why your GP did not test for GGT-I found out abroad-that's how I knew but I also Knew I was drinking too much.

  • Do you have cirrhosis?

  • I hope not but I'm in a similar postion to you -it is a possibility. i definitely had a very inflamed liver which has improved -still have issues like pale stools etc.-very little liver pain but back discomfort on left hand side-which could be due to nerve damage-this can happen with alcohol withdrawal. Having my GGT tests done next week-will keep you posted.

    best

  • Hi

    I have read some of your history and some of your symptoms sound very much like stress/anxiety related. Im not saying there isn't something wrong, but im sure the anxiety is amplifying your issues.

    3 years of drinking is unlikely to cause Cirrhosis, it is possible but it would have to be a bottle of vodka a day type of drinking and drinking for breakfast.

    Your single reading of 18umol can be caused by Gastritis, colon issues, pretty much anything that slows the bile down can cause a little bump. Mine was 19umol when I had inflamed intestines and stomach.

    The ultrasound is around 85% accurate at ruling out Cirrhosis and about 75% accurate in ruling out F3 Fibrosis, 65% F2 and for F1 its a 50/50. A completely clear ultrasound doesn't rule out early damage but it should rule out F3 which is the start of the progressive kind of scarring. That said, yes there have been some people where it misses them, but its rare. no test is perfect.

    There are of course many causes for Liver damage, which may or may not show raised enzymes, but normally there would be some fluctuation of them but still in range or near normal range. IF you have a history of steady enzymes and CBC you are unlikely to have serious damage occurring.

    As the others have suggested a Fibroscan is something your going to need to have it is designed to look for Fibrosis. The newer ones can also measure fat present. You could well have an early fatty liver than wont show on ultrasound and may not pop your enzymes initially. Hopefully with a clear Fibroscan you can recover from your anxiety or atleast know you have a little fat present.

    I went to the "London Clinic" and got a Fibroscan and a consultation with a Hep doctor for £350 with a full on blood work up to.

    And lastly don't under estimate your Liver it is designed to deal with toxins and it has amazing powers of restoration, many alcoholics recovery fully even after insane levels of drinking because they stop before F3 kicks in.

  • Thanks ralph. I was drinking about a half bottle of vodka a day and would sometimes wake up and drink on an empty stomach. I don't think I would be this worried if I didn't have discomfort in the liver area.

  • I know what its like to have the "doom loop" I didn't sleep for 3 months thinking I was about to turn yellow or throw up pints of blood. It was terrifying and to certain extent Im not sure I will ever get over that fear completely.

    If it was a 700cl bottle that is 350ml of vodka, that isn't far off a bottle of wine, a bit more,but many drink a bottle of wine a day for life without issues. Whilst your drinking was not healthy for the long term I don't think 3 years would lead to end stage F4 scarring and with clear bloods and ultrasound to boot.

    You could have a gall bladder issue, that can get irritated by binge drinking, a HIDA scan might be an idea.

    I went to the doctors and saw about 6 of them in the end, a couple admitted to drinking 5 or 6 pints at the weekend and a younger doctor about 30 years old admitted to drinking Friday and Saturday pretty heavily. The body can take a fair bit of alcohol, the Liver usually fails after 20-40 years of low level inflammation that has gone unchecked. Im very confidant that you are fine and even if you did have some signs of Liver stress it wont kill you and with a clean life from now on it will recover any low level damage.

  • Thanks Ralph it's refreshing to see someone in the same shoes. I feel sorry you had to go thru this. It is the worst feeling and I've been dealing with it for a very long time. I was a social drinker maybe a little more starting at the age of 21 so I drank before I started the 3 year daily drinking.

  • Hi..I am from NZ,but was living in Australia, 24 years...over there I got hep c...i was having a lot of liver pain and they did MRIs,and ruled stuff out,and an ultrasound only picked up a gallstones,for 2 years the surgeons said no to removal of my gallstone and said the pain was just from bile strictures,there was nothing on the ultrasound to worry about,saying my liver was unremarkable,and I have had hep c 20+ years,and I hounded those surgeons until they unwillingly decided to remove my gallbladder,as they didn't want to do that..well they got their wish...I woke up and said yahhh it snout to be told no we left it in,I'm like what.. they said when they opened me up they saw terrible cirrhosis of my liver,so all the ct scans,ultrasounds,MRIs did NOT pick up any stage of fibrosis at all,only dilated bile and pancreatic ducts,and the ultrasound only picked up gallstones...so my whole world had changed because my cirrhosis was missed. I actually believed the surgeons we're lying because they didn't want to remove my gallbladder, even when they showed me a photo of my cirrhosis..I didn't believe them.

    I had a bleed one night..esophageal, where I vomited up blood and two ambulances were called..I was given a blood transfusion.

    Then another ultrasound, when I went to the hospital with pain,it was my gallbladder.I said did you see the cirrhosis to be told,NO what cirrhosis, your liver is fine,perfect..so I'm really thinking what the heck is going on...

    Then I had to wait 8 months to see a hepatologist, one of the best in Australia and she had a FIBROSCAN machine,and she physically examined me first,then used the probe which confirmed I indeed had cirrhosis,and ultrasounds were handy and needed every 6 months for me to pick up HCC which is cancer as I'm high risk,but it can miss small tumours and they aren't seen sometimes till they are large...so then I had to leave Australia,and come to NZ and have another ultrasound so as I'm in the system and once again it came back as unremarkable liver normal in size and contour,no action required and picked up the dilation only on the pancreas,the gallstone..only one this time...and I started thinking that the two sturgeons in Australia were lying to cover up the first lie,that's called misdiagnosis and more,but why would they do that,why open me up and refuse to remove a gallbladder when they see cirrhosis,because....its actually quite dangerous to do surgery in cirrohotic patients.

    So here's me looking to see if any one else has cirrhosis and it was missed 3 times on different ultrasounds, what is the chance of that? So tomorrow I'm seeing a hepatologist, who is experienced in all fields of gallbladder,pancreas and liver..and he has a fibroscan,so its been a year since the last one and nothing on the recent ultrasound at all.I have been under dreadful stress and enjoy my wine on a Friday night and the weekends,and no I'll effects....I feel great...and can't wait to be told that the fibroscan tells them that its reversed.....because I still bloody believe its not because ultrasounds are pretty right,right...wrong!!!!!

    My LFTs have always been up and down as of the hep c...but my platelets are low,as my wbc and neutrophils been low too...that is a sign of cirrhosis,but...my spleen was also unremarkable on the ultrasound..my legs are all skinny from losing all protein..but I have osteoporosis, a symptom of cirrhosis also...

    So be interesting to see what this herpetologist says....I said no to treatment,but can't have it as my hepatologist said no it wouldn't work,maybe come back in 3 years to see,but she doubts it,and I'm happy with life,and yeh I get you shouldn't drink its bad for your liver,not mine,it says liver unremarkable so I can enjoy every drop....sarcasm actually.

    If you want to really know there's only two ways for sure,that is a biopsy and or fibroscan....fibroscans measure the stiffness of our liver using a probe,much like a ultrasound but more intense..it sends pulsating probes and that will tell you if you have no liver disease,to fibrosis and you have 4 stages of that,then a cut off point and into cirrhosis...from anything to 75 on the machine.

    So..if your ultrasound says you don't have cirrhosis and you have symptoms...find a fibroscan...cause I seem to be the only one in the dam world where they say no cirrhosis on ultrasound, so I don't have it..oh but I have it on fibroscan..ultrasound is useless on me...

    Always get a second opinion,because I'm sure there's others been told nothing is wrong with their liver and there seriously is..people are not finding out they have cirrhosis until the late stages,because of this..then its usually too late.

    I will shut up now...all the best

    S501 :-)

  • Dear linz have read all post .i do understand your anxiety.in hindsight i had this autoimmune liver condition years ago prob 25 but at that stage all lfts were normal at the time but 4 pregnancys later witj glandular my liver started to struggle then my lfts were way off the mark and it was discovered that i had an autoimmine liver dusease which can long term cause cirrhosis but what you have to bear mind is that its taken about 28yrs to go from mild symptoms to cirrhosis but i cant take the cause of mine away as the antibodies that cause the damage.if you have addressed your drinking then hopefully your liver should be able to start recouperating.it would probably still b worth going back to the docs and explain again about the pain.

    ....there could be other causes of pain so bear that in mind.it does sound as if youve given your liver a far old bashing so i think you need to be completely honest witj yoir doc be really honest about how long and how much youve drunk then they can take that into account...or have you done that already?dont panic even if you have some damage the liver can usually improve a bit if you take away the cause.go back to docs please.good luck cazer.

  • Thanks for the reply. Yes I told them how much and for how long. They said with normal lft and ultrasound I should be fine they were not concerned and ordered no further testing. But these symptoms are scary

  • I think you will have to focus on the symptoms of pain and fatigue as they can ignor this less as they shouldnt leave you in pain.the problem is the docs dont like people tryimg work out whats wrong witj them...they sort of dig their heals on even more! If you say you are worried they will just assume you are over anxious which i suspect is whats happened.however if you go in and say this pain is really awful i need something for it then its less easybfor them to ignore it.sometimes if you can go to docs whem its a locum you stand a better chance of get a good comsultation.if all else fails as someone else said pay for a fibroscan.did you say all blood tests were normal? Also i had ulcers which caused quite a lot of pain they have now healed with meds.do you get reflux....acid coming up .if so make sure you tell them this.as i say if normal ultrasound and normal bloods then it would not make sense for you to have bad cirrhosis.yes you could have beginnings of milder damage but the liver can work really well with only part okay.eat little and often healthily...try not to have junk...i would avoid orange juice as its very acid

    Also no alcohol.when i started getting serious changes in health then the blood tests were wromg.i was told that ultrasound only shows very course changes so i believe that if you just had very slight imflammation you may not know about it....but by the same token that would not be any great problem.you have to have pretty severe scarring which then furs yhe liver up which in turn blocks up the bloodflow and causes varices....this is what i now have but.my blood s have been wrong for 16/17yrs .if this was where yoi were with it then your blood tests would not be normal as far as i know.they found my varices with an endoscopy and discovered the ulcers!2for1ha ha!!!please try not to worry about scare stories about bleeds etc as is so very unlilely you have anything like this.best wishes c.

  • P.s fatigue can be caused by a huge no. Of things...so just mention it again but dont self diagnose just state the fact that the fatigue is a problem.good luck.c.

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